Part 7: Reflections on a First Anniversary

The story of one man's heart transplant, from initial diagnosis of cardiomyopathy in July of 1992 through recovery from heart transplant today in October of 1995, written in seven parts.

- written by Jim Gleason

from 7/92 through 10/95

Heart Transplant Recipient reborn on Oct. 19th, 1994

Written at home (Collegeville, PA) - Oct 19-21, 1995

"When the last moon is cast
Over the last star of morning
And the future is past...
...Its the last Unicorn.
I'm alive...I'm alive!...I'm ALIVE!!!"

. . . I often join in singing this beautiful song with Kenny Loggins on his CD: Return to Pooh Corner,

. . . . . . . . . especially that last refrain!

It's Thursday morning, October 19th, 1995. My wife Jay and I join our daughter, Mary, for Mass at our local church, St. Teresa of Avila, before going off our separate directions for work this day. It's a break from our normal pattern, although this whole past year has been a break from our "normal" pattern. One year ago today, a Wednesday, at this early hour of the morning, 7:30am, I had been summoned to the nurse's station phone (at the Hospital of the University of Pennsylvania). For five weeks we had been awaiting this very call, but even so I had not anticipated that this would be "it." The night before I had gone to sleep fully accepting the fact that, after two years of illness, this heart was now failing to where medical science could not sustain it any longer. If it were now, just this one year later, I would probably have been put on the new Heart Mate - a portable heart that bridges patients in such conditions over until a heart can be found - but this wasn't this year, it was 1994. We needed a miracle, one that had not been coming for these past months of waiting. Earlier the previous day, I had reviewed my understanding of the failing situation and then thanked Dr. Loh, the Transplant director, for everything they had been able to do. I had still not given up, but did understand and accept what looked like the inevitable, and do you know what? Facing death head-to-head like that isn't so scary after all (much easier to write about now, fully alive a year later, but equally true back that fateful October Tuesday night).

The "Miracle" Call

That phone call at the nurse's station (taken with IV pole in tow) was our "miracle." The transplant coordinator (was it Cathy or Heather? I can't honestly remember, but the words spoken, I clearly do...) announced: "Mr. Gleason, we have a heart for you!" Wow! A year later I sit here at my keyboard and get teary-eyed emotional at the recollection. That event signaled the beginning of my new life. I don't know if I can do justice to describing what it is like to go from that acceptance of life's end to being reborn again - with a heart that was estimated to be that of a 20-year old by the doctor reading my echocardiogram, but I will try in this writing. And in answer to your question, that is about all I am allowed to know about my donor heart. All thank-you's to the donor's family have been conveyed in a veil of mutual confidentiality, as is the custom. Am I ever curious? Yes. Will I ever know any more? Only time will tell, but I will ask more about this when I go in for the 1st annual hospital testing next Tuesday. If I do find out anything, you can be sure there will be another piece written on it for sharing with you and my many readers, so please be patient along with me on this one, OK?

Prayers of Thanksgiving

Our prayers at that early morning Mass of thanksgiving are very special. We reflect on how our joy has meant such trial and sorrow to our donor's family, and we pray for them. As a family we have gone through much in the past twelve months, only part of which is directly related to the "change of heart" as I refer to it. In my earlier writings I introduced you to many in our large loving family of supporters. Well, several of them support from "up above" now, having passed through the very gate I had been facing. They were not turned back. I was. My mother, world traveling partner and loving nurse, Grace, died suddenly of a blood clot as she was leaving a hospital after a very active and full life of 77 years. We attended her funeral. As her oldest son, I offered her eulogy. We all cried together. The next month, the 26 year young nephew you came to know as "Jake" - one of mom's best walking buddies - after a tough year+ battle with leukemia - joined her in passing through that gate just before Easter Sunday. We attended his funeral. And again we cried together. Still a short while later, yet another mother in this family of mourners, Jinny, died of cancer herself. We didn't all get out to her funeral out in Ohio, but we did cry together, yet again. A few months later, my wife's mother, Ceil, after her own 2-1/2 year fight against brain cancer, died quietly at home. Once more I was honored to give the eulogy of love for someone so dear to us all. And we continued to cry for our own loss, all the while dreaming of the gathering these beautiful people must be having "up there" with family who had gone before them.

I can't, and wouldn't even try to, describe my own feelings throughout these events. Here I was alive and recovering well after the miracle of this heart transplant. My mother, my nurse through this experience, was alive one day, and not the next! What a sense of loss when I received my bi-weekly biopsy report from Cathy (or Heather) and, after relaying it to Jay, I went to make that routine next call to mom to share the good news of "No Rejection!" with her, "my nurse" - only there was no one to answer the phone any more (again my eyes fill up as I share these thoughts with you...). Both Jay and I immediately consoled ourselves with the realization that now Mom knew the results even before we did - an advantage she would certainly have enjoyed - yes, but only a minor consolation.

Above and Beyond Support

My nephew, Jake, you may recall, had so unselfishly asked his doctors if he could donate his heart to his "uncle Jim" and then later, despite weakness and life threatening treatments, showed up in a wheelchair in my hospital room (making good his promise of weeks earlier!). It doesn't seem fair that a 26 year old in the prime of his life should leave us while I, a 52 year old who had lived a very rich and love filled life, find myself undergoing, at this first anniversary, a stress test. I talk to Jake as my partner in helping me over the test's tough points. How I see him in so many things yet shared. Just recently, his wife sent me a tape he had made to reply to my own tape of encouragement to him. This tape was his voice from last September. Instantly I was transported from my car (as I was commuting to work now) back to that long wait in the hospital as he offered words of encouragement and challenge from his own hospital bed up in New Jersey. Like I said, I wouldn't try to make them any more real for you. Just let your own imagination fill in the details.

The Circle of Life

Finally, just weeks after Ceil's death, our daughter, Susan (and of course her husband, Chris) presented us with our first grandchild, a 9lb 6.5oz baby girl to be named Carol Marie. We flew to Chicago - my first trip since the transplant - to share in the birthing adventure - then again later for the beautiful Baptism. The year before I had gone out to Chicago for Susan's graduation, but ended up lying in bed and not being able to attend the very ceremony we had gone out for, the heart was so bad. Then we returned home early. This was such a triumphant return and successful test of the new heart. Again we sat in church and I cried - but this time, in the truest sense of the "circle of life." My eyes filled with tears of joy as I looked down at a smiling Carol Marie. I reflected on how I had been granted this gift of a second life to be here to meet her and welcome to this great life she was just beginning the newest "Cookie Monster" (get it? CM: Carol Marie, Cookie Monster?). I had so much to share with her (sorry, I have to pause as the tears clear fill my eyes again at this beautiful thought...). I was to get the chance to tell her stories of my father, Jim, my original Cookie Monster model - of my mother Grace (her great-grandmother), of Ceil (her other great-grandmother), of Jake, of such a strong line of beautiful family that have gone before her. I can only hope and pray that she carries in her the best of all these family traits. Certainly her parents, Susan and Chris, will help nurture and develop these gifts passed on so lovingly.

Looking great!

From Mass (getting back to the details of this anniversary day...), I went in to my office at Unisys and was constantly lifted up by the well wishes and supportive expressions of amazement by so many fellow workers. I really don't do my feelings justice here by referring to them as "fellow workers." So many have followed this daily recovery progress so enthusiastically and with such loving support that they too have become "family." Some even help me keep up the daily regimen of an exercise walk at lunch - now that's really "going the extra mile," huh? The oft heard: "Wow, you look great!" does even more than the barrage of daily pills that serve to prevent rejection of this "foreign" heart. The medical team remind me that it will never be accepted by my immune system. These twice daily pills keep the internal defenders at bay - but never stop taking them or you will die! I strongly encourage fellow transplant patients to go back to work and receive their own daily dose of "supportive wishes" - it's such a key part of that recuperation - and so much easier to take than those pills! (and, unlike the pills, they have no side effects - except maybe some swelling of the head, but that's not painful, at least not to the patient himself).

A Full Year?

I find it so hard to believe that it's been a full year already - but then, neither can anyone else. "Wow! (...there's that word again..) It's been a year already!!" "Yes," I reply, checking inside myself to make sure that it really has been a year. My book about the whole beautiful experience (yes, it really has been beautiful and special...) occupied much time and attention during that year. This outlet helped me to express personal excitement over this miracle of rebirth. It also afforded me a chance to do something in thanks by helping so many others that follow us on this path of medical challenge. It truly is amazing to see how many others face similar life threatening events. These writings have been seized by patients and their families and friends in such desperation as they face their own trials - both heart and other types. It was a special thrill utilizing my technical skills to get the entire work published on the Worldwide Internet - truly the modern age publishing medium. This makes it available free to anyone in the world, and at no cost to my own very limited financial resources. Neat, huh?

Looking Back

Looking back over these 12 months, our problems have been so minor. A little Tachacardia here, some racing heart beats (SVT's) there, a little virus (CMV) that came and went so easily (despite medical articles that explained its potentially deadly role), weight gain (an on-going problem), recently shingles (a potentially painful and dangerous virus) broke out and spent its course on this face of mine with no medications. Even a cold passes in its normal course - a relief when ones hears so much about the effects of the "immune suppressed" state of my body systems. How much of this is attributable to a very strong and positive attitude? A good question. I have little personally to prove my answer, but I do believe that to be an important factor, and there are many medical studies to support the theory. Good attitude certainly can't hurt, right?

So many new friendships, some of whom you have heard about in earlier chapters. You remember Eddie (and his famous RollsRoyce luncheon), and Mary (we still are corresponding regularly). At 89, Mary fights to write despite her handicaps of blindness and painful arthritis, but as she says so beautifully: "I don't write so well anymore, but I do enjoy reading.." i.e., her incoming mail. Again yet another of her treasured letters humbles me when it appears in our mail amid all those hospital bills.

What about those "3 Heart Beats?" I'm often asked if we still see each other. Well, yes and no. We really haven't kept up any formal correspondence. Its been just an occasional greeting like my calls on their own "anniversaries" this week. You may recall our three hearts all came in within the same week back last October. Its a coincidence when we cross paths in the schedule for biopsies at the hospital. All three of us fall in the category of "95% success through the first year" and hope to keep that comradeship alive for many more.

Many other patients and/or families from far and wide going through similar challenges have joined this circle of friends through this book (A GIFT OF THE HEART). Its always such a pleasure to explain to them that the writing is "copyrighted" - but in my case I explain that that means they are given the right to copy it freely and pass it on to anyone who can make use of it. The resultant calls and comments (especially since its available worldwide on the Internet's "information superhighway") have come from hospitals in NYC and as far away as California. Such calls make please me with the thought such sharing can relieve the anxiety or fears of others facing the same experience.

Many medical professionals have become "extended family" with their own love and concern that seems to go so far beyond the professional call of duty. Whether its Mary Ann, the lead HUP nurse you read about, or Janet, my cardiologist's nurse, or Dr. Real who, along with his wife, Karen, attended our First Anniversary Open House this weekend ( a "real" doctor who makes "house calls" like that!), our corporation's nurses, Kaye and Nancy (who take temps and blood pressures regularly), not to mention the many doctors and nurses who attend to the regular checkups, biopsies, or faxed questions on daily symptoms that come and go - Drs. Loh, Ackers, and Kelly, coordinator nurses Heather and Cathy - they all have crossed that fine line into friendship/family with their love and support. All contribute in their own way to this richness and quality of life I so often write about. Recently, I presented this "transplant story" at my 35th high school reunion. It received a standing ovation. I felt so humbled since I only represented all these friends and supporters in standing there telling of their success in keeping me alive. As I explained to these classmates of so many years ago, when I said by way of introduction: "Its so good to see you here again..." - those words have such special added meaning for me in light of this story.

Then and Now

At mid-day, I again called my wife to reminisce about where we were this time one year ago. About 1pm I was climbing onto the surgical bed to be taken down to the floor where the transplant would take place. Family was left in the waiting room to share their anxiety for the next 8 hours while I slept blissfully unaware of what was going on around me. Everyone worried while I was blessed with escape into the dream world of the anesthesia for what would be the next day or so. Even any awareness of that first awakening, with so many tubes all over the place and down the throat, hands tied down to prevent pulling those tubes out (a thought I had so feared in the weeks of waiting) - is gently erased by the after effects of the anesthesia - what a blessing for the patient - that initial sight so very hard on the family.

When we came home from the hospital, a miraculous 10 days after the surgery, it was with dire warnings of keeping away from groups or anyone who might carry infections (so harmless to everyone else, but so deadly to the "immune suppressed" transplant patient). I was so frustrated not being able to celebrate together. A year later its so very different. Contact is no longer a problem. Jay and my daughter, Mary, threw a party in the form of an Open House at our home to celebrate the "1st Anniversary!" We all enjoyed that beautiful sharing. Neighbors, co-workers, and family - all joined (70 strong - despite heavy thunder showers and flooding) to celebrate and share in the amazement of this "miracle among them." Again, you had to be there to get the full impact, but I can tell you it was very emotion filled and fun for all.

Impacting So Many Others

Jay has pointed out that for this past twelve months I have been so wrapped up in my own survival that I may not have noticed the tremendous impact the whole event has had on some very close family and friends. Slowly it has come out in close conversations that this is very true. Wow, what a feeling to know that these closest of relationships actually bridge even to sharing such a life threatening experience that way. In a very real sense the "we" is actually "one" in this closeness. I don't know how to express myself to these partners in living. Maybe over the course of this second year (and beyond), we can find ways to communicate more effectively about it. For now, let me just say: "I love you too!"

Later that party night I was asked if there were any surprises or disappointments in the guests who attended. I responded that the appearance of our family physician, Dr. Real, was a very pleasant surprise (we even put him to work interpreting the X-ray image of a heart on our home PC in THE TOTAL HEART program's illustrations!). But the anticipated visit by a long time mentor and friend from Unisys (with whom I had worked for about a quarter of a century) that never happened, was a disappointment. You can imagine our surprise the next day when that friend, Mario, and his wife, Rita, appeared for the party - only a day late! Talk about being fashionably late! We had our own private second celebration with quiet conversation about years of shared career stories - it really made our day, long after we had wound down and reluctantly accepted the closing of the fun party. Life has been so full of such beautiful surprises over this past year - a perfect way to climax this first year - amid friends, loving memories and lots of wishes for "many years of living to come" and "you're looking so good!" Boy, what that does to raise that feeling of energy and amazing well-being. As I so often respond: "I feel even better than I look!"

I guess that one card said it best with its simplicity. The picture is that of a chest pounding, grinning lion, shouting "Y-y-e-s-s-s-s!", and inside the message continues: "Congrats!!" (Thanks, Deb and Jeff, for saying what we all were feeling...)

Stress Testing, the Fun Way

Another big moment in this past year occurred just recently when Bill and I traveled to New Mexico to both surprise his brother, Doug, on the occasion of his 50th birthday, and spend some time fishing in the area of the Sante Fe River. Wow, what a trip it was. I will admit to feeling a certain apprehension, not having tested this new heart at elevations of 10,000 feet up in the Jemez Mountains. It seemed to love the environment - hiking down steep trails and climbing mountain stream rocks as we fished for the native brown trout. Even the climbing back out - later to cook the fish over the open fire streamside - was no strain at all! Wish I could have taken signed notes from our hosts to the effect that this should replace the 1st annual hospital stress testings. It certainly was a better test, and so much more fun, too. Neither the dry desert air nor the reduced oxygen levels at those altitudes posed any problem at all. What beautiful sunrises and sunsets. We sat in the open hot tub and counted the infinity of night stars, even the shooting ones! Life is really great!

Frustrations and Sadness

"Frustrations?" Sure. I thought I would be able to finally be able to take the time to learn how to play the piano while on that "forced vacation" - but this was not to be. Even with my piano teacher mother here during the nursing phase of the recovery, there just wasn't enough time, what with exercise, rehab, preparing those nutritious meals, reading, routine trips to HUP for testing, writing these articles, etc. I still hold on to that dream, however.

You don't ever let down on the vigilance of taking those 44 daily pills - such a minor frustration, really. I found myself feeling frustrated recently with "doing the lawn" - until I recalled that this same time last year I was holed up in that small hospital room, unable to do anything like this at all. All of a sudden the mowing becomes a joyful celebration of this life filling energy provided by the new pumper! Repairing that new leak in the ceiling repeats the same feelings. Fixed - both the leak - and the attitude. Its all perspective, that's all. The bi-weekly biopsies? They have become so routine with no pain to speak of - and they provide such welcome knowledge of what's really going on inside. They offer a feeling of comfort and safety, despite the terrible sounding procedure described later in Section 2.

If there's a sadness to go along with all this joy and excitement, its the realization that so many others around you every day seem to not recognize the "amazing gift that life is each and every day." You definitely view and live life with a different set of priorities from the perspective of looking back from death's door like this. So many "major problems" become insignificant and not worthy of loosing any sleep over from such comparison. I would recommend that approach to everyone reading this, hoping you don't have to live the experience yourself to learn this beautiful lesson of life. On the other hand, seemingly "little things," like this cold I'm fighting right now, are the cause for major concern, at least until I find that even this suppressed immune system of mine seems to be handling it just fine! Today we got the first reports back on the battery of tests that take place at this point in a transplant's life (and every other annual anniversary, for that matter). The EKG, Echocardiogram, stress test, and catheterization all were passed with flying colors. The biopsy, however, again is God's little way of reminding us that we shouldn't get too "cocky." Seems there's a "very slight indication of rejection." As before, the decision is to "wait and see" with another biopsy scheduled in just two weeks (instead of the usual month) to insure that this will go away like it did the last time. If not, well, then its time for a super dose of meds to protect from the full rejection - at least that's what happened the one other time. How do I feel about that? Pretty lucky to have the medical team at HUP to keep their eyes so alert for me like this. It is a feeling of total confidence based on their skills and honesty in the past - and yet one of humility too. Again, a prayer of thanks is said for this gift of today, again, today! "Thank you, everyone, for your concern." Please, keep up those prayers, OK? This is a lifetime thing and I do so hope you're there for the long haul with me, right? I know you are. "Thanks!"

Closing This "Last" Chapter (again...)

In closing out this chapter of my "new" life, let me just say, equally simply,

"Thank you, God!"

and to each and every one of you out there: "Thanks, from the bottom of my (young new) heart!" This heart has come as the gift it is, and has decided to stay, with all your encouragement. I hope to have you stop in for our 2nd Annual Open House, same time, next year, OK?

A gift of poetry for a 1st Anniversary:

The Doctor said, right from the start
What you've got is a worn out part.
But don't despair, we have the art
To replace it with a brand new heart!

- by uncle Bill

"Thanks!"

PS: Again I thought this was the "final chapter." Again I was wrong. Dr. Loh had suggested back when I approached him to write the book's Introduction that I ask our many supporters to contribute their own stories. Recently that request was turned into action. Close family and friends who have gone through this experience with us have been invited to share their views, feelings, copings, and anything else that might be useful to readers in handling their own challenges. The collection of those writings includes insights even from two who are no longer with us in the earth sense of the word, Jake and Grace. While this is still in the input stages, I feel that chapter may prove to the most worthwhile of all the insights shared here. So please join them in Section 2 as they add their own stories - just for you...

That's Jay and I just to the right of the mailbox. Our daughter Mary is the one to the left with her boyfriend, Brian's, arms around her. Our son Mike, is the big smile in the back on the right with his finance, Kim, in his arms.